Published on 15.04.16 in Vol 18, No 4 (2016): April
Works citing "Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study"
According to Crossref, the following articles are citing this article (DOI 10.2196/jmir.5011):
(note that this is only a small subset of citations)
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Canaway R, Boyle DI, Manski‐Nankervis JE, Bell J, Hocking JS, Clarke K, Clark M, Gunn JM, Emery JD. Gathering data for decisions: best practice use of primary care electronic records for research. Medical Journal of Australia 2019;210(S6)
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Franklin EF, Nichols HM, House L, Buzaglo J, Thiboldeaux K. Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes. Journal of Patient Experience 2020;7(6):1115
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Andrews SM, Raspa M, Edwards A, Moultrie R, Turner-Brown L, Wagner L, Alvarez Rivas A, Frisch MK, Wheeler AC. “Just tell me what’s going on”: The views of parents of children with genetic conditions regarding the research use of their child’s electronic health record. Journal of the American Medical Informatics Association 2020;27(3):429
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Ford E, Oswald M, Hassan L, Bozentko K, Nenadic G, Cassell J. Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK. Journal of Medical Ethics 2020;46(6):367
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Wetzels M, Broers E, Peters P, Feijs L, Widdershoven J, Habibovic M. Patient Perspectives on Health Data Privacy and Management: “Where Is My Data and Whose Is It?”. International Journal of Telemedicine and Applications 2018;2018:1
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Skovgaard LL, Wadmann S, Hoeyer K. A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good. Health Policy 2019;123(6):564
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Shah N, Coathup V, Teare H, Forgie I, Giordano GN, Hansen TH, Groeneveld L, Hudson M, Pearson E, Ruetten H, Kaye J. Sharing data for future research—engaging participants’ views about data governance beyond the original project: a DIRECT Study. Genetics in Medicine 2019;21(5):1131
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Kreitmair KV, Cho MK, Magnus DC. Consent and engagement, security, and authentic living using wearable and mobile health technology. Nature Biotechnology 2017;35(7):617
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Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry of public opinions on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 2018;3:6
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Silina V, Kalda R. Challenges for clinical practice and research in family medicine in reducing the risk of chronic diseases. Notes on the EGPRN Spring Conference 2017 in Riga. European Journal of General Practice 2018;24(1):112
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Uwizeyemungu S, Poba-Nzaou P, Cantinotti M. European Hospitals’ Transition Toward Fully Electronic-Based Systems: Do Information Technology Security and Privacy Practices Follow?. JMIR Medical Informatics 2019;7(1):e11211
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Crowhurst N, Bergin M, Wells J. Implications for nursing and healthcare research of the general data protection regulation and retrospective reviews of patients’ data. Nurse Researcher 2019;27(1):45
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Burns K, McBride CA, Patel B, FitzGerald G, Mathews S, Drennan J. Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage. Journal of Medical Internet Research 2019;21(6):e12367
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Tsai F, Junod V. Medical research using governments’ health claims databases: with or without patients’ consent?. Journal of Public Health 2018;40(4):871
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Mbuthia D, Molyneux S, Njue M, Mwalukore S, Marsh V. Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems. BMC Medical Ethics 2019;20(1)
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Courbier S, Dimond R, Bros-Facer V. Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations. Orphanet Journal of Rare Diseases 2019;14(1)
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. Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate. European Journal of Cancer 2018;104:70
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Shen N, Bernier T, Sequeira L, Strauss J, Silver MP, Carter-Langford A, Wiljer D. Understanding the patient privacy perspective on health information exchange: A systematic review. International Journal of Medical Informatics 2019;125:1
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Wagner L, Frisch M, Turner-Brown L, Andrews S, Edwards A, Moultrie R, Alvarez Rivas A, Wheeler A, Raspa M. Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder. Disability and Health Journal 2020;13(4):100927
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Stoeklé H, Bollet M, Cobat A, Charlier P, Bloch OC, Flatot J, Draghi C, Tolyan V, Hervé C, Desvaux P, Uzan L, Grynberg M, Alcaïs A, Tolédano A, Vogt G. French‐style genetics v. 2.0: The “e‐CohortE” project. Clinical Genetics 2019;96(4):330
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Jones RD, Krenz C, Gornick M, Griffith KA, Spence R, Bradbury AR, De Vries R, Hawley ST, Hayward RA, Zon R, Bolte S, Sadeghi N, Schilsky RL, Jagsi R. Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology. JCO Oncology Practice 2020;16(9):e977
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Garcelon N, Neuraz A, Salomon R, Faour H, Benoit V, Delapalme A, Munnich A, Burgun A, Rance B. A clinician friendly data warehouse oriented toward narrative reports: Dr. Warehouse. Journal of Biomedical Informatics 2018;80:52
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. User-focused data sharing agreements: a foundation for the genomic future. JAMIA Open 2019;2(4):402
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Brill SB, Moss KO, Prater L. Transformation of the Doctor–Patient Relationship: Big Data, Accountable Care, and Predictive Health Analytics. HEC Forum 2019;31(4):261
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Hassan L, Swarbrick C, Sanders C, Parker A, Machin M, Tully MP, Ainsworth J. Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia. Research Involvement and Engagement 2017;3(1)
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Kim KK, Sankar P, Wilson MD, Haynes SC. Factors affecting willingness to share electronic health data among California consumers. BMC Medical Ethics 2017;18(1)
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Budin-Ljøsne I, Teare HJA, Kaye J, Beck S, Bentzen HB, Caenazzo L, Collett C, D’Abramo F, Felzmann H, Finlay T, Javaid MK, Jones E, Katić V, Simpson A, Mascalzoni D. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 2017;18(1)
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Pandya-Wood R, Barron DS, Elliott J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Research Involvement and Engagement 2017;3(1)
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Broes S, Verbaanderd C, Casteels M, Lacombe D, Huys I. Sharing of Clinical Trial Data and Samples: The Cancer Patient Perspective. Frontiers in Medicine 2020;7
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. A beginner’s guide to data stewardship and data sharing. Spinal Cord 2019;57(3):169
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O’Brien EC, Rodriguez AM, Kum H, Schanberg LE, Fitz-Randolph M, O’Brien SM, Setoguchi S. Patient perspectives on the linkage of health data for research: Insights from an online patient community questionnaire. International Journal of Medical Informatics 2019;127:9
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Grundstrom C, Korhonen O, Väyrynen K, Isomursu M. Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study. JMIR Medical Informatics 2020;8(3):e16102
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Karampela M, Ouhbi S, Isomursu M. Personal health data: A systematic mapping study. International Journal of Medical Informatics 2018;118:86
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Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, Luft HS, Wilfond BS, Lee SS. Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research. The American Journal of Bioethics 2018;18(4):3
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Smith TG, Dunn ME, Levin KY, Tsakraklides SP, Mitchell SA, van de Poll-Franse LV, Ward KC, Wiggins CL, Wu XC, Hurlbert M, Aaronson NK. Cancer survivor perspectives on sharing patient-generated health data with central cancer registries. Quality of Life Research 2019;28(11):2957
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Stoeklé H, Mamzer-Bruneel M, Frouart C, Le Tourneau C, Laurent-Puig P, Vogt G, Hervé C. Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine. Science and Engineering Ethics 2018;24(1):307
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Peiper NC, Baumgartner PM, Chew RF, Hsieh YP, Bieler GS, Bobashev GV, Siege C, Zarkin GA. Patterns of Twitter Behavior Among Networks of Cannabis Dispensaries in California. Journal of Medical Internet Research 2017;19(7):e236
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Hammack-Aviran CM, Brelsford KM, McKenna KC, Graham RD, Lampron ZM, Beskow LM. Research Use of Electronic Health Records: Patients’ Views on Alternative Approaches to Permission. AJOB Empirical Bioethics 2020;11(3):172
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Stockdale J, Cassell J, Ford E. “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 2019;3:6
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Joo S, Kim S, Kim Y. An exploratory study of health scientists’ data reuse behaviors. Aslib Journal of Information Management 2017;69(4):389
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Winickoff DE, Jamal L, Anderson NR. New modes of engagement for big data research. Journal of Responsible Innovation 2016;3(2):169
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Shen N, Sequeira L, Silver MP, Carter-Langford A, Strauss J, Wiljer D. Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: Qualitative Study. JMIR Mental Health 2019;6(11):e13306
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Cardillo L, Cahill F, Wylie H, Williams A, Zylstra J, Davies A, Fullwood L, Van Hemelrijck M. Patients' perspectives on opt-out consent for observational research: systematic review and focus group. British Journal of Nursing 2018;27(22):1321
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Fiske A, Prainsack B, Buyx A. Data Work: Meaning-Making in the Era of Data-Rich Medicine. Journal of Medical Internet Research 2019;21(7):e11672
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Mamo N, Martin GM, Desira M, Ellul B, Ebejer J. Dwarna: a blockchain solution for dynamic consent in biobanking. European Journal of Human Genetics 2020;28(5):609
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Abuhammad S, Alzoubi KH, Al-Azzam SI, Karasneh RA.
Knowledge and Practice of Patients’ Data Sharing and Confidentiality Among Nurses in Jordan
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Skelton E, Drey N, Rutherford M, Ayers S, Malamateniou C. Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting. International Journal of Medical Informatics 2020;143:104271
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Jokinen A, Stolt M, Suhonen R. Ethical issues related to eHealth: An integrative review. Nursing Ethics 2021;28(2):253
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Armstrong RA, Mouton R, Hinchliffe RJ. Routinely collected data and patient‐centred research in anaesthesia and peri‐operative care: a narrative review. Anaesthesia 2021;76(8):1122
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De Sutter E, Zaçe D, Boccia S, Di Pietro ML, Geerts D, Borry P, Huys I. Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review. Journal of Medical Internet Research 2020;22(10):e19129
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Stoeklé H, Ivasilevitch A, Hervé C. Dynamic Consent in Neuroscience Too?. AJOB Neuroscience 2021;12(1):70
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Wallace SE, Miola J. Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives. BMC Medical Ethics 2021;22(1)
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Lensink MA, Boers SN, M Gulmans VA, Jongsma KR, Bredenoord AL. Mini-gut feelings: perspectives of people with cystic fibrosis on the ethics and governance of organoid biobanking. Personalized Medicine 2021;18(3):241
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Viberg Johansson J, Bentzen HB, Shah N, Haraldsdóttir E, Jónsdóttir GA, Kaye J, Mascalzoni D, Veldwijk J. Preferences of the Public for Sharing Health Data: Discrete Choice Experiment. JMIR Medical Informatics 2021;9(7):e29614
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Reeves J, Treharne GJ, Theodore (Ngāpuhi and Te Arawa) R, Edwards (Taranaki Iwi, Ngāruahine, Tāngahoe, Pakakohi, Ngāti W, Ratima (Whakatōhea and Ngāti Awa) M, Poulton R. Understanding the data-sharing debate in the context of Aotearoa/New Zealand: a narrative review on the perspectives of funders, publishers/journals, researchers, participants and Māori collectives. Kōtuitui: New Zealand Journal of Social Sciences Online 2022;17(1):1
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Coe D, Birt A, Forbes G, Ling J, Foster M, Robson S, McDonald J, Yiannakou Y. The connected patient project: moving towards a population-based primary health care research registry. BMC Health Services Research 2021;21(1)
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Zidaru T, Morrow EM, Stockley R. Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice. Health Expectations 2021;24(4):1072
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Sleigh J, Vayena E. Public engagement with health data governance: the role of visuality. Humanities and Social Sciences Communications 2021;8(1)
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Viberg Johansson J, Shah N, Haraldsdóttir E, Bentzen HB, Coy S, Kaye J, Mascalzoni D, Veldwijk J. Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies. Technology in Society 2021;66:101625
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Mudd-Martin G, Cirino AL, Barcelona V, Fox K, Hudson M, Sun YV, Taylor JY, Cameron VA. Considerations for Cardiovascular Genetic and Genomic Research With Marginalized Racial and Ethnic Groups and Indigenous Peoples: A Scientific Statement From the American Heart Association. Circulation: Genomic and Precision Medicine 2021;14(4)
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Schroeder K, Bertelsen N, Scott J, Deane K, Dormer L, Nair D, Elliott J, Krug S, Sargeant I, Chapman H, Brooke N. Building from Patient Experiences to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action. Therapeutic Innovation & Regulatory Science 2022;56(5):848
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De Sutter E, Verreydt S, Yskout K, Geerts D, Borry P, Outtier A, Ferrante M, Vandermeulen C, Vanmechelen N, Van der Schueren B, Huys I. Using provocative design to foster electronic informed consent innovation. BMC Medical Informatics and Decision Making 2022;22(1)
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Joseph CLM, Tang A, Chesla DW, Epstein MM, Pawloski PA, Stevens AB, Waring SC, Ahmedani BK, Johnson CC, Peltz-Rauchman CD. Demographic differences in willingness to share electronic health records in the All of Us Research Program. Journal of the American Medical Informatics Association 2022;
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Jagals M, Karger E, Ahlemann F. Already grown-up or still in puberty? A bibliometric review of 16 years of data governance research. Corporate Ownership and Control 2019;19(1):105
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Nwebonyi N, Silva S, de Freitas C. Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions. Frontiers in Public Health 2022;10
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Hermansen A, Regier DA, Pollard S. Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences. Journal of Medical Systems 2022;46(12)
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Goncharov L, Suominen H, Cook M. Dynamic consent and personalised medicine. Medical Journal of Australia 2022;216(11):547
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Muller SHA, van Thiel GJMW, Vrana M, Mostert M, van Delden JJM. Patients’ and Publics’ Preferences for Data-Intensive Health Research Governance: Survey Study. JMIR Human Factors 2022;9(3):e36797
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Verweij ME, Gal R, Burbach JM, Young-Afat DA, van der Velden JM, van der Graaf R, May AM, Relton C, Intven MP, Verkooijen HM. Most patients reported positively or neutrally of having served as controls in the trials within cohorts design. Journal of Clinical Epidemiology 2022;148:39
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Rusu I, Popa-Fotea N, Stanculescu MO, Rusu D, Dumitru A, Scafa-Udriste A, Udrea O, Micheu MM. The Attitude of Patients from a Romanian Tertiary Cardiology Center Regarding Participation in Biomarker-Based Clinical Trials. Medicina 2021;57(11):1180
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Wang Z, Stell A, Sinnott RO. A GDPR-Compliant Dynamic Consent Mobile Application for the Australasian Type-1 Diabetes Data Network. Healthcare 2023;11(4):496
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Scherer J, Yogarasa V, Rauer T, Pape H, Heining S. Perspectives of Patients With Orthopedic Trauma on Fully Automated Digital Physical Activity Measurement at Home: Cross-sectional Survey Study. JMIR Formative Research 2023;7:e35312
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Kassam I, Ilkina D, Kemp J, Roble H, Carter-Langford A, Shen N. Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review. Journal of Medical Internet Research 2023;25:e42507
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Hasani N, Farhadi F, Morris MA, Nikpanah M, Rahmim A, Xu Y, Pariser A, Collins MT, Summers RM, Jones E, Siegel E, Saboury B. Artificial Intelligence in Medical Imaging and its Impact on the Rare Disease Community: Threats, Challenges and Opportunities. PET Clinics 2022;17(1):13
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Simpson E, Brown R, Sillence E, Coventry L, Lloyd K, Gibbs J, Tariq S, Durrant AC. Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review. Frontiers in Public Health 2021;9
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Meagher K, Curtis S, Gamm K, Sutton E, McCormick J, Sharp R. At a Moment’s Notice: Community Advisory Board Perspectives on Biobank Communication to Supplement Broad Consent. Public Health Genomics 2020;23(3-4):77
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McCormick JB, Hopkins MA. Exploring public concerns for sharing and governance of personal health information: a focus group study. JAMIA Open 2021;4(4)
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Tseng CH, Chen R, Tsai S, Wu T, Tsaur W, Chiu H, Yang C, Lo Y. Exploring the COVID-19 Pandemic as a Catalyst for Behavior Change Among Patient Health Record App Users in Taiwan: Development and Usability Study. Journal of Medical Internet Research 2022;24(1):e33399
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Kalkman S, van Delden J, Banerjee A, Tyl B, Mostert M, van Thiel G. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. Journal of Medical Ethics 2022;48(1):3
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Thabrew H, Aljawahiri N, Kumar H, Bowden N, Milne B, Prictor M, Jordan V, Breedvelt J, Shepherd T, Hetrick S. ‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI). Journal of Empirical Research on Human Research Ethics 2022;17(4):471
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Muller SH, van Thiel GJ, Mostert M, van Delden JJ. Dynamic consent, communication and return of results in large-scale health data reuse: Survey of public preferences. DIGITAL HEALTH 2023;9
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Shi J, Yuan R, Yan X, Wang M, Qiu J, Ji X, Yu G. Factors Influencing the Sharing of Personal Health Data Based on the Integrated Theory of Privacy Calculus and Theory of Planned Behaviors Framework: Results of a Cross-Sectional Study of Chinese Patients in the Yangtze River Delta. Journal of Medical Internet Research 2023;25:e46562
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